7 Lessons I Learned About Recovery From Illness

My first ebook, How to Create Your Own Action Plan for Recovery, is available in the new webshop now!

It’s a 200 – page guide for people with chronic illness or injury, for those who want to rebuild their health after a long sickbed, serious operation or life-altering accident.

Because being chronically ill or injured can turn your life upside down. And the situation becomes even more unsettling when doctors can’t figure out what’s wrong with you. When modern medicine doesn’t have a cure for the pain you experience every day. When at best you’re given pills and therapy to help manage your symptoms, not cure them.

I’ve been there, for many, many years.

I’ve been through the tiring and heart-wrenching process of endless doctors visits and second-opinions, living with a chronic disease that has no remedy, turning to every complimentary therapy imaginable in the hopes of finding comfort or relief.

Diagnosed with juvenile rheumatism, fibromyalgia and ME/CFS during my early teens, I was housebound and unable to do the simplest things for the longest time. Going through the process of fighting illness and acceptance for over 15 years, I learned many things.

Here are the most important lessons that the road to ‘recovery’ has taught me.

7 Lessons Learned on the Road to Recovery

1. You Get to Decide What ‘Recovery’ Means to You.

When people talk about recovery from illness, they usually refer to being fully healed and getting back to normal life. But in reality, regaining your former health and resuming your activities isn’t always possible. Some of us suffer from health problems that cannot be cured, no matter how hard you try. Others keep experiencing residue symptoms, such as lasting fatigue after cancer or mobility issues as a result of severe bone fractures.

The conventional definition of ‘recovery’ is too limiting for these people: it implies a fixed final destination at the end of the road – one that many of us may never reach.

So what if we stop thinking of recovery as an all-or-nothing deal, but rather as a continuum with many more stages, variations and dimensions than simply “being better”?

‘Recovery’ can mean anything you want it to be: (small) physical or mental improvements, a better quality of life or being able to do something you couldn’t do before. Meaningful examples of this new version of recovery could be being able to walk to the shops again, becoming more independent, picking up your favorite hobby again or getting back to work parttime.

As for me personally, I wouldn’t call myself recovered in the narrow sense of the word. I find myself on the good side of the spectrum, but being chronically ill for over fifteen years has clearly left its marks. Compared to healthy women my age, there are many things I cannot do.

Working a regular job is still too taxing, but I work from home part-time, at my own pace. My brain’s still too foggy to safely get my driver’s license, but I managed to finish my Psychology degree with excellent grades. I can’t exercise or join in on every activity, but I get to run around after my energetic toddler all day. I still have to be structured and carefully manage my energy, but eventually I get things done that are meaningful to me. My overall health, capacities and taxability may still fall short, but my days are no longer a struggle from waking until sleeping.

And although I’ll never stop believing in even better times ahead, that’s enough recovery for now.

2. Recovery is a Long and Winding Road.

Healing is not a lineair process. Unlike the stories you see in the media, recovery is not a simple uphill battle. There are many ups and downs along the way. Depending on your illness – whether it’s curable or chronic, relatively stable or progressive – this process of setbacks and personal victories can repeat itself multiple times.

That’s because ‘being healthy’ isn’t as black-and-white as it’s usually portrayed. Most of us find ourselves in the huge grey area between optimally fit and terminally ill. Even a healthy person’s immune system can be working overtime to (successfully) fight off a nasty virus, and even a chronically ill person can have a relatively good week. Your health fluctuates every day for as long as you will live, constantly trying to find that illusive equilibrium.

What’s more, restoration doesn’t happen over night. Even a shallow cut takes a few days to heal.

So don’t give up too soon if you don’t notice any improvements straight away. Recovery is a marathon, not a sprint.

3. You Can Fight for Recovery and Accept Your Illness at the Same Time

Living with serious illness or injury can feel a lot like starring in your own action hero movie. Just like the on-screen stars, you’re faced with seemingly impossible challenges when you have serious health problems. Everyday living can seem like a quest, demanding extraordinary willpower to complete simple tasks and to achieve your goals.

But when your struggle to rebuild your health feels like a never-ending story, where do you draw the line? When, if ever, do you say: “I don’t want to fight any more, I’m giving up my attempts to get better“?

Contrary to what you might think, it is possible to accept your current limitations and keep fighting for your recovery at the same time. Because facing today’s reality doesn’t mean you give up hope for tomorrow. It just means you make the best of the given situation in this moment, instead of forcefully trying to change something that cannot be changed right now. It’s saying: “Apparently, this is all my body and mind are capable of doing right now, and I will live life the best way I know how despite of my illness.”

At the same time, you can still take smalls steps every day towards a better health, just without the constant struggle and disappointment of not being able to live up (your) expectations.

Focus on what you can control or improve, how ever little that might be today, and find ways to accept the things you cannot change.

4. Take a Holistic Approach to Recovery.

Despite what Descartes believed, you can’t strictly separate the body from the mind. It’s all connected: the thoughts and feelings you have trigger a cascade of neuropsychological responses in your brain, which then sends neurotransmitters and hormones to all parts of your body to adequately act upon the situation at hand.

That’s why recovery should cover the entire spectrum of the healing process: your physical, mental and emotional wellbeing, as well as the state of your social and physical surroundings. Health programs shouldn’t just focus on eating healthy and moving your body, but also go into often overlooked aspects such as getting high-quality rest and improving your attention span.

Your health encompasses so much more than just your physical state.

5. Find a Balance between Fighting for Recovery and Quality of Life.

Managing your symptoms and working on your recovery can be a full-time job – especially when you already have limited energy and mobility. Following a strict diet, intense exercise program or (complimentary) therapy protocol can take up a lot of your time and resources, leaving little room for anything else.

Now of course you’d do anything to get better. But when rebuilding your strength and fitness takes longer than a few manageable months, it might get harder and harder to stick to your healthy routines if you constantly miss out on meeting up with friends, spontaneous dinners or other happy moments because it interferes with your treatment.

Without joy and love in your life, it’s harder to cope with hardship and to stay motivated during the long process of setbacks and recovery. In the long run, having moments of happiness, an optimistic outlook and a peaceful mind are just as important as a fit and strong body – maybe even more so. And yet, in the end, you still need a certain level of energy and mobility to do what you want in life.

So how do you find a balance between making steady progress with your health and still enjoy the things that drive your desire for recovery in the first place?

Entrepreneur Corbet Barr once made a business analogy that’s also fitting for life with chronic illness or injury: “You have to find yourself at the intersection between striving and acceptance.” When the road to recovery takes time, a laser-sharp focus on rebuilding your health might be less attainable than a balanced mix of pursuing health goals, managing symptoms and staying happy in the process. Try to nourish your soul as much as you care for your body and mind.

6. Focus on Crowding Out Instead of What You Have to Give Up.

Because recovery can be such a long process with its ups and downs, focusing on adding good things to your daily routine instead of cutting out bad things helps you stick to your healthy habits in the long run. You still get the same results but you won’t feel like you’re denying yourself anything.

The idea of nourishing your body with health-boosting nutrients that taste good too is a lot more exciting than ‘going on a diet’ and giving up your beloved pizza and cookies for good.

So instead of begrudgingly chewing on carrot and celery sticks, eat healthy snacks you love. Make healthier versions of your favourite comfort food. Have a glass of green juice on busy mornings to set the tone for a vibrant day and soak up the extra vitamins, whatever the rest of the day might bring foodwise.

The concept of crowding out applies to other aspects of a healthy lifestyle as well. Stop ‘working out’ and do activities you actually enjoy: go for a walk on the beach, take a dance class, ride your bike. Create a meditation practice that feels like a peaceful moment in your day, not another item on your to-do list. Practice self-care in the broadest sense of the word.

7. Accept That Sometimes There is No End Goal.

Recovery can be an ongoing effort with its fair share of setbacks and achievements along the way. But sometimes, no matter how hard you try, your body and mind just can’t (fully) heal themselves.

If there’s no victory, is it even worth the struggle?

Only you can decide that. But to me, it’s not just the destination that matters, it’s the journey – basically, your life – as well.

What will you have done along the way? How much joy did you experience? Were you able to achieve some of your dreams by striving? Did you have less pain and symptoms – and therefore a better quality of life – thanks to your recovery efforts?

If you’re anything like me, knowing you’ve done all you could have to get better, feel better, live life the way you wanted to can help you learn to accept remaining limitations and disappointments.

After spending my teenage years sick at home, I want to live. I want to explore the world, laugh with my friends, care for my family, dance and sing, go on spontaneous mini-adventures, to make everyday life as happy and fulfilling as it can be. Some days, it’s a real struggle and I still can do less than I would like to. But now, when I’m having a bad day, I no longer feel frustrated and sad, because I did my part. The rest is out of my hands. And the 15-year old version of me who lay in bed all day would’ve been so happy if she’d known that her life would turn out to be like it is now.

That’s why it’s worth it try to rebuild your health, even if you’ll never be fully cured.

Leave a comment below this post about which small change or improvement will have the biggest positive impact on your life (e.g. better sleep, less pain, improving my mobility, doing more things you enjoy…);

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About me

I’m a psychologist living with chronic illness. I want to help you feel as energetic, symptom-free and happy as possible, by showing you how to create lasting health habits and by giving you advice on how to cope with (chronic) health problems.